“You’re my Creativity Director”

This week, I met a family who was devastated by their healthy baby randomly coding, escalating into pretty immediate brain death, and therefore dragging them into the longest three days of their lives. 

I met the family shortly after the code had happened and the child was intubated. The doctors needed to place an art line; a sterile procedure that required the family to leave the bedside. I took them to a quiet room along with our chaplain and provided them with water and crackers. I then sat in the room with them as they grieved and cried in confusion and hurt. I listened as the mother’s family member comforted her and reminded her of her faith. Mom at one point broke out in a gospel worship song and sang the bridge over and over. 

I left the room momentarily as I had a thought. I grabbed paint, a canvas, and paintbrushes and hurried back to the quiet room. Mom was still very emotional (rightfully so) and I wasn’t quite sure how I was going to bring my idea up or if there’d even be a right time. They turned on some worship music and swayed back and forth to the music, beginning to calm and create a stillness in the room. I swayed along in my seat with them. And then the moment presented itself.

I asked mom if she wanted to channel some of this energy into something tangible. Something she could do for her baby, with her baby. 

I was bringing up memory-making without actually bringing it up. I knew, as a staff member and knowing what all of this meant following the code and hearing the doctors say “brain death” that this was not looking good, but mom did not yet. 

I told mom that based on her ability to lean on music, I didn’t know if she would feel comfortable leaning on anything else creative, like art. I shared my idea of having her handprint and then baby’s handprint be placed on top. I told them I could overlay their favorite song lyric, Bible verse, or quote overtop of the handprints and it could remind her of the strong bond she has with her baby. 

Mom immediately sat up. 

Yes, thank you. Oh my gosh, this is amazing that y’all do this” 

And then the doctors came in.

And did not bring good news.

And mom broke down.

And mom was hurt.

And I sat with her in silence as she grieved.

And we didn’t do any memory making that day.

Instead, I let them grieve, checking in periodically and mainly providing them with the tangible things they needed – water, sprite, crackers, Kleenexes, directing family members to the room, etc. I was meeting their basic needs and nothing more.

The next day, I checked on them again, only providing them the things they asked for- particular movies for mom and baby to watch together, water, coffee, and saying hi to mom and her family I had met the day before.

Lunch time came around on day 2 and I peeked in the quiet room just to show my face again.

The whole family let out a “There you are! We were JUST talking about you!

Me? Why?

Mom then said, “Do you remember yesterday, you offered me an opportunity to channel my energy into something good for my baby? I want to do that today.

And then, just like that, memory-making was brought up organically again. I offered her hand/foot prints and then also explained our 3-D hand molds that we offer. I wasn’t sharing it as something she could “take with her when he’s gone” but rather something she could do WITH her baby today.

To literally make a memory.

Working in the PICU, I’ve had a lot of experience with memory-making, death and working with grieving families, but I have never experienced a bereavement like this.

At one point, mom shared with me that she’d been telling all of her friends that I’m the “Creativity Director” because she couldn’t remember what my job title was.

I gratefully told her she may keep calling me that, as it sounds more prestigious than my current job title. LOL 

She knew I was creative, I made her feel safe, valued, and cared for, and I provided her with opportunities to create memories with her baby. 

I learned so much from this bereavement; this experience with this family changed the way I view bereavements. It doesn’t have to be sad. I don’t think I’ve ever laughed so hard with a family during hand/foot prints and hand/foot molds. The nurse the next day that was helping me position the baby for molds came up to me and said “I don’t think I’ve ever had that much fun in a bereavement situation”. 

Not every bereavement will look like this, I’m aware.

But I will do a better job in the future of assessing families and deciding if I need to be their child life specialist or their creativity director. 

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